Mark Leffingwell Wendy Komarnitsky lets her sons Dirk, 4, middle, and Kyle, 22 months, left, taste the gluten-free cupcakes she made.

For sufferers of Celiac Disease, a simple grain can be deadly

By Susan Glairon, Camera Staff Writer
January 13, 2003

For most of his first year of life, Dirk Komarnitsky kept up fine with the doctors' birth weight charts. But at about 9 months, just about the time he was introduced to solid food, the otherwise health baby began to rapidly lose weight. He had frequent bouts of diarrhea and vomiting. As he got older, he began to literally scream when his mother opened the refrigerator. He often refused to eat.

"There were times I thought he wasn't going to make it to the next week because he was so skinny and sickly," says his mother, Wendy Komarnitsky. "The thought of eating was so repulsive to him."

At age 2 , Dirk weighed a mere 20 pounds and was admitted to Children's Hospital in Denver for what doctors called a "failure to thrive." After countless tests over six days, he was sent home without a diagnosis.

Six months later, a biopsy of Dirk's small intestine revealed he was suffering from Celiac Disease, also known as Celiac Sprue. The often overlooked genetic disorder is caused by a bodily reaction to gluten, a protein found in wheat, barley, rye and oats. It typically causes bloating, weight loss, diarrhea and severe abdominal pain. Left untreated, it can lead to malnutrition and can be life threatening.

Dirk's severe symptoms surfaced after he was introduced to oatmeal. His younger brother, Kyle had the same reaction after a day care worker fed him spinach baby food that contained barley.

Today Dirk, 4, and Kyle, 22 months, are on strict, gluten-free diets and have normal appetites. Dirk weighs 31.5 pounds, and Kyle weighs 24 pounds, lean but healthy weights for kids their age.

Nearly one of every 150 Americans suffers from Celiac Disease, according to a recent study by the University of Maryland Center for Celiac Research in Baltimore. In the Denver metro-area, a local support group has more than 600 members.

The disease was first discovered during World War II when some European countries didn't have access to wheat. Doctors began to notice marked improvements in patients with chronic gastrointestinal disorders and began to investigate. The disease became more commonly recognized in the 1950s. In the past decade, more conclusive blood tests have become available, and diagnoses have soared.

The disease occurs much more frequently in people of northern European decent, specifically those of English and Irish ancestry, and is less common in African Americans and Caucasians of southern European origin.

Though it is genetic, someone may be a carrier without having the disease. Neither Komarnitsky nor her husband tested positive for the illness.

In those with the genetic defect, even minute traces of gluten can trigger the body's immune system to turn on itself, damaging finger-like projections, called villi, in the small intestine which are critical for nutrient absorption.

In severe cases, the reduced nutrient absorption results in malnutrition and can lead to chronic fatigue, an inability to concentrate, infertility, impotence, depression and behavioral changes. Others with less severe symptoms may be anemic, have abnormal bleeding due to a lack of the blood-clotting Vitamin K, or suffer early-onset osteoporosis due to malabsorption of Vitamin D and calcium. In rare situations, the disease progresses to intestinal lymphoma, a type of cancer.

A strict diet

In an increasing number of cases, the symptoms are vague, making diagnosis more difficult, says Dr. Joel S. Levine, professor of medicine in the division of gastroenterology at University of Colorado's School of Medicine in Denver. He has seen otherwise healthy, non-smoking young women show up in his office with early-onset osteoporosis and test positive for the disease. Some patients with unexplained iron-deficiency anemia, or mild symptoms such as bloating, gas and diarrhea, also have tested positive.

In some cases, a rash is the only symptom. Others have the genetic abnormality their whole life, but don't show symptoms until their senior years. The severity of symptoms is related to how much of the bowel is affected, Levine says.

Those suspected of suffering from Celiac Disease are given a blood test which screens for specific antibodies found in 95 percent of people with the disease. A biopsy of the intestine is used to confirm the diagnosis.

There is no cure. But the disease can be managed with a strict, life-long gluten-free diet.

Those with the disease cannot eat even small amounts of gluten. Levine has seen churchgoers who adhere to a strict gluten-free diet become violently ill after eating a communion wafer. Sometimes the physical reactions to gluten lessen over time, but damage to the small intestine continues, leading to further complications later.

"There is nothing I can give someone that they don't have to be on a gluten-free diet," Levine says.

Those who follow the diet regenerate most of their villi, normal absorption resumes and their symptoms disappear, Levine says. Those who don't wear down their small intestine.

The diet is complicated because gluten is found in unusual places. It's used as a thickener in canned peaches; it's also found in beer (malt barley), hot dogs (wheat fillers) and some ice cream. Vitamins and both over-the-counter and prescription drugs may also contain gluten.

"They have to look at everything," Levine says. "They can't have one meal that's different or unchecked. It is not an easy diet."

Those with Celiac Disease can eat meat, fruit, vegetables, milk and eggs. They can use flours of corn, rice and soy — found in health food stores — to bake bread, cookies and other baked goods and can eat spaghetti and other pastas made from those flours. But gluten-free flours are tricky to cook with because gluten prevents crumbling in baked goods and gives breads their nice chewy flavor, says gluten-free chef Carol Fenster, a Centennial resident who has written five gluten-free cookbooks.

She cooks with flours made from rice, potato, tapioca or sorghum (a gluten-free grain in the corn family). Substitutions for gluten include xanthan gum (a polysaccharide produced through a fermentation process), which is essential for keeping breads and baked goods from falling apart.

Parents of young children must be extremely diligent about their children's diets. Komarnitsky keeps her home gluten-free, even though she and her husband tested negative for the disease. She worries her kids will pick up crackers or other foods at day care or friend's houses. One bite will make them violently ill.

"(Kyle) puts everything in his mouth," Komarnitsky says. "One grain of rice and he will get diarrhea and throw up. His behavior becomes extremely erratic."
[Alek Note: This was a mis-quote by the reporter - rice is**OK** for Celiac folks, what Wendy said was that "One piece of wheat the size of a grain of rice"]

Nonetheless, she is relieved that the mystery is solved, and that her kids no longer fear food.

"I'd rather hear, 'Mom I'm hungry,' than 'I love you,'" Komarnitsky says. "It's the best sound."